Can the Social Model Explain All of Disability Experience? Perspectives of Persons With Chronic Fatigue Syndrome

Taylor, Renée R.

doi:10.5014/ajot.59.5.497

Cited by 24 publications

(22 citation statements)

References 23 publications

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“…One participant commented, “It’s nice to hear others have similar symptoms and that I am not imagining them all.“ Another participant reported, ”I don’t have to struggle, to my own detriment, to be like everyone else around me that are healthy and inflexible or not interested in educating themselves on CFS. I can find support and understanding” [41]. …”

Section: Resultsmentioning

confidence: 99%

Patient capacity and constraints in the experience of chronic disease: a qualitative systematic review and thematic synthesis

et al. 2016

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BackgroundLife and healthcare demand work from patients, more so from patients living with multimorbidity. Patients must respond by mobilizing available abilities and resources, their so-called capacity. We sought to summarize accounts of challenges that reduce patient capacity to access or use healthcare or to enact self-care while carrying out their lives.MethodsWe conducted a systematic review and synthesis of the qualitative literature published since 2000 identifying from MEDLINE, EMBASE, Psychinfo, and CINAHL and retrieving selected abstracts for full text assessment for inclusion. After assessing their methodological rigor, we coded their results using a thematic synthesis approach.ResultsThe 110 reports selected, when synthesized, showed that patient capacity is an accomplishment of interaction with (1) the process of rewriting their biographies and making meaningful lives in the face of chronic condition(s); (2) the mobilization of resources; (3) healthcare and self-care tasks, particularly, the cognitive, emotional, and experiential results of accomplishing these tasks despite competing priorities; (4) their social networks; and (5) their environment, particularly when they encountered kindness or empathy about their condition and a feasible treatment plan.ConclusionPatient capacity is a complex and dynamic construct that exceeds “resources” alone. Additional work needs to translate this emerging theory into useful practice for which we propose a clinical mnemonic (BREWS) and the ICAN Discussion Aid.Electronic supplementary materialThe online version of this article (doi:10.1186/s12875-016-0525-9) contains supplementary material, which is available to authorized users.

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Section: Resultsmentioning

confidence: 99%

Patient capacity and constraints in the experience of chronic disease: a qualitative systematic review and thematic synthesis

et al. 2016

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“…People with ME/CFS expressed concern about the ME/CFS label, whereas referring to the illness as depression is less controversial [63]. Taylor [64] noted that there is a lack of identification among people with ME/CFS within the disability community. From a physician perspective, recent studies indicate that general practitioners lack confidence in diagnosing ME/CFS because of no known cure and concern of the consequences produced by the ME/CFS label [65].…”

Section: Resultsmentioning

confidence: 99%

“…Physician minimization is common in that they believe people with ME/CFS or fibromyalgia do not behave or look the way a sick person is expected [60]. Taylor [64] found that patients experience both minimization and mistrust of their illness by others. Denz-Penhey and Murdoch [53] recognized the need for doctors to legitimize symptom control and proposed a call to not completely dichotomize psychological and physiological illnesses.…”

Section: Resultsmentioning

confidence: 99%

A review and meta-synthesis of qualitative studies on Myalgic Encephalomyelitis/chronic fatigue syndrome

Anderson

Jason

Hlavaty

et al. 2012

Patient Education and Counseling

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Objective To review and synthesize findings across qualitative studies on Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS). Methods Articles were systematically reviewed and analyzed within a meta-analytic framework. Analyses included a multi-perspective (e.g., individual, physician, familial) examination of ME/CFS, as well as a comparative analysis of ME/CFS versus other chronic conditions. Results Thirty-four (34) qualitative studies on ME/CFS were identified and included. Findings include three substantive thematic areas that focus on studies concerning: (1) experiences of people with ME/CFS, (2) experiences of physicians, and (3) themes that intersect both of these groups. For patients, illness development influenced identity, reductions in functioning, and coping. Physician-specific themes described lack of awareness about the illness and recommended improvement in medical education. Themes that intersected expressed issues with diagnosis which creates tensions and fuels the stigmatization of ME/CFS. Conclusions Findings indicate multilayered, context-specific experiences and ways in which both people with ME/CFS, as well as the people involved in their lives, such as family or the medical community, understand their illness. Future qualitative studies should coalesce the various facets of the ME/CFS experience, the network members of people with ME/CFS, and the sociocultural environment through which the illness is understood. Practice implications Health care professionals can gain unique insight from patient experiences, allowing for more accurate diagnoses and treatment recommendations.

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“…To have a common understanding of the components in rehabilitation due to stress-related disorders might, according to Taylor (38), be of importance since people with stress-related disorders often feel misunderstood by healthcare professionals and to include various actors could be considered a strength in this study. However, carrying out separate studies of former clients and team members might secure a more in-depth knowledge of their unique experiences from rehabilitation which could also be valu-able for the development of rehabilitation within this field.…”

Section: Methodological Considerationsmentioning

confidence: 99%

An exploratory study of the rehabilitation process of people with stress-related disorders

Eriksson

Karlström²,

Jonsson

et al. 2010

Scandinavian Journal of Occupational Therapy

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The aim was to describe how former clients with stress-related disorders and rehabilitation team members experience the rehabilitation process, and to describe how experiences from the rehabilitation have been integrated into the former clients' everyday lives. A qualitative grounded theory approach was used. The sample consisted of seven team members working at a vocational rehabilitation clinic and eight former clients who were interviewed. The participants were involved in four different rehabilitation programmes, all of which used cognitive approaches. In addition, two of the programmes offered activities in a therapeutic garden. The result highlighted experiences that might have contributed to changes in the former clients' self-image, development of conscious strategies for handling stressful situations, and changes in values attached to everyday occupations. In addition, two different modes of integrating experiences from rehabilitation into the former clients' everyday lives were identified: changing approaches to handling stressful situations in everyday life and changing occupational repertoire in everyday life. Important implications might be that activities which promote relaxation and enjoyment should be included in the rehabilitation of people with stress-related disorders since experiences from these activities seemed to facilitate occupational balance in everyday life.

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Can the Social Model Explain All of Disability Experience? Perspectives of Persons With Chronic Fatigue Syndrome

Cited by 24 publications

References 23 publications

Patient capacity and constraints in the experience of chronic disease: a qualitative systematic review and thematic synthesis

Patient capacity and constraints in the experience of chronic disease: a qualitative systematic review and thematic synthesis

A review and meta-synthesis of qualitative studies on Myalgic Encephalomyelitis/chronic fatigue syndrome

An exploratory study of the rehabilitation process of people with stress-related disorders

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